Monday, May 31, 2010

A Gift From Mimi's Garden

...because she knows how much I love them...


Thank you, Mimi :)

Friday, May 28, 2010

What's That Beeping Noise, Part Three (I think)

That would be T-Bear’s butt. Or, maybe his thigh. I’ve lost track. But, just to show how nonchalant I’ve become about the pump…

I knew T-Bear was going to need a Pod change this afternoon. But, I’ve stopped compulsively counting down every hour until the current Pod expires. I know, the term “expire” sounds kind of dire, acute, and critical (“This Pod will self-destruct in 10 seconds…”). But you actually have about an 8-hour window after expiration before the Pod stops functioning. Very nice. Unless you run out of insulin.

So, I knew we needed to do a Pod change this afternoon. I took the PDM and test kit down to the Imaginarium and got T-Bear set up to test for afternoon snack.

“Oh,” I said, “Look. We’ll need to change your Pod soon.”

“Oh,” T-Bear said, “Is that why I’m hearing a beeping noise?”

“Oh,” I said, “Are you hearing a beeping noise? I wonder what that could be.”

Duh.

The Pod knew it needed to be changed, and was telling us so. We (huh) didn’t get it. No matter. It fell off about 20 min later when T-Bear changed his pants. Slap on new Pod. Good to go.

I love technology. Especially when it appears to be smarter and more reliable than I am.

Tuesday, May 25, 2010

The Graduate

Well, I'm not sure exactly how it happened, but tonight I graduated from the YMCA Coach Approach program. I got a certificate, and everything. I almost cancelled my appointment with Carol, my Wellness Coach, because I'd so sucked at sticking to my exercise routine the last three weeks (what, with Papa Bear traveling so much, and me getting up every few hours to stab T-Bear and dose him, I didn't manage to exercise every day?!?), but she was very understanding ("Sometimes Life happens"), and expressed complete confidence that I would be back on the ball and exercising regularly again very soon. She managed to fluff me up so much, I even stuck around and did a full circuit on the weight machines before I headed home. Now, I was expecting this to totally, Totally, TOTALLY suck, because I hadn't done any regular weight training for a few weeks. But, amazingly, I managed to hit all of my weight and repitition targets on every machine without screaming in agony. Apparently, it takes longer than I thought to lose muscle strength once you've built it up. Thank goodness. Now I won't be so wimpy about getting back into the gym.

So, just because I can, here's a post I drafted a couple of weeks ago when I was kicking myself in the butt for losing my motivation. But, I didn't post it because I didn't have enough motivation to (no, I don't actually post everything I write). Heehee.


All of My Marbles Have Rolled Off My Plate (drafted 5/11/10)

Really. Just about every last one of them has rolled right off my plate and into The Great Nothingness Beyond. All that energy and gumption, all that determination and desire to walk and exercise and be active, all that focus on myself and keeping healthy so I can be a Rock Of Support for my family and so I don’t melt into a Pathetic Puddle Of Ooooze as I grow older. Gone. Catput. Lost it. Every single marble. No “plop”, just an “oh, shit, there it goes” as another one disappears into oblivion. Don’t know if I’ll ever get ‘em back. Maybe, maybe not. I probably should care, but I’m just too tired to right now.

But, I continue to comfort (or delude) myself by thinking that this really is not The Optimum Time to be instituting life-altering, life-long, life-enhancing changes in my personal life. Maybe, just maybe, in the first year of my son’s diagnosis with a life-threatening, (currently) non-curable disease may NOT be the BEST time to Pull Myself Together and Be The Best I Can Be. Maybe, just maybe, I could give myself just a LITTLE more time to tackle the whole “Me Improved” project. Maybe, just maybe, I could give myself a few more years, say, until after BooBooBear is old enough to do his chores on his own, and BroBear is old enough to be kid-watching his siblings and hitting the books without me “inspiring” him, and T-Bear is old enough to recognize when he’s low and needs to check his BG and correct, and exactly how to do that without me standing right there. Maybe, just maybe, I could cut myself a break and not demand quite so much of myself just at this particular time in my life. Maybe.

So, here I am. Marbles all gone. Exhausted. Weary. Every pound lost slapped right back on my gut. Trying not to kick myself in the ass because I’ve lost my momentum. Trying not to think how humiliating my next Wellness Appointment with my Wellness Coach is going to be, ‘cause it’s gonna be ugly, and I may be the only member of the Y ever to fail the Coach Approach program, ever. (I wonder if they post the failures on the bulletin board, right up there next to the graduates?).

Then, I read Meri’s post about her friend’s marbles, and I think, “Oh, maybe I’m not the only mom who’s lost ‘em.” And, I realize how many more marble Meri’s got on her plate. You know, the Golden Marbles. The ones with a beloved child’s face on them. The ones with diabetes. Or the ones with a life-threatening allergy. Or the ones with cancer. The Ones You Just Can’t Drop. Ever. And, how exhausting is that? How energy-sucking, soul-enriching, life-fullfilling is that? To be part of saving the life of a child … or three children … who would have been condemned to death just 50 years ago by a diagnosis that most people don’t even understand.

And you’re right there, at the forefront, leading the charge in keeping them alive and well and THRIVING every single day. Every singled blessed day. Every single exhausting, frustrating, soul-wrenching, FANTASTIC day. You. Bulging belly and all. Flabby muscles and all. Exhausted spirit and all. Right there. Every day. Every hour. Every minute. Because that’s what it takes. And, Goddamnitt baby, you’ve got what it takes.

You may have lost your marbles, mama, but you’ve got juevos, and that’s what it takes to keep your kiddos thriving.

So, Rock On, Mamas With Juevos.

Saturday, May 22, 2010

Fort Daniel Archeological Dig

Yesterday we met up with Grace and Family and headed to the Fort Daniel archeological site. They were having an "open house" of sorts, and being an archeologist, Papa Scot seems to be in the loop on these things. The kids had a great time.




Young Archeologists digging in a trench.

T-Bear took up the task of sifting the soil from the trench...


...and almost immediately found shard of plate.


An established part of the dig, the remains of a building.


Teamwork: BroBear and T-Bear sifting soil.


BooBoo (dressed at a Messenger Parrot) checks out the "giant Lincoln Logs".


BroBear forming a brick from Georgia clay.


Sprinkle with sand to prevent sticking.
Experience with baking bread is a plus.


The empty form.
"Ft. Daniel 1813"

Plop the loaf into the form, and press down.


Level off with a wire.


Pop it out of the form.


BooBoo's turn.


Needs a little help with the pressing.


Shaving...


...and popped into a box to take home.
About two weeks of air-drying, and we'll have a brick ready for firing.
Only 9,999,9999 more to go :)


"Smithy", as the boys insisted on calling him.


Smithy's works.

Musket shot found in the "dig for treasure" area.

The young ladies learning skills essential to snagging a husband in 1813...sewing.


All the kids in varying degrees of 1813 dress.


An 1813 Beauty.
Also a 2010 Beauty...


Thank you, dear friends, for a wonderful day!


Friday, May 21, 2010

Roasting Coffee Beans

Papa Bear's newest project is roasting our own coffee beans. BooBoo Bear is his partner in the roasting project.

They start with a few handfulls of "green" coffee beans from Deans Beans.


The beans go into a slightly modified air popper with a thermometer hanging over the reservior for determining the appropriate temperature.


The chaff gets blown out into a container.


The roasted beans are poured out into a collander for cooling.


BooBoo has his own unique technique for cooling the beans.


And, there we have it. Freshly roasted coffee beans, ready to be ground and brewed.


I must admit, they make a nice cup of coffee...

Tuesday, May 18, 2010

Garden Log 5

The herb/lettuce garden.
Slightly out of hand, just as I like.


Clover in the lawn.
I love it. Papa Bear, not so much.

Looks like the forest floor...


Daylilly set to bloom.


Boo the Garden Cat.

Friday, May 14, 2010

What Shall I Pack ... or, I Love Bags

Now that T-Bear is on the OmniPod and all of his “basic” stuff will fit into two SPIBelts (yes, I got a nifty blue one for myself – woohoo!), I’ve been asking myself whether or not I need to carry “emergency” supplies with us when we go anywhere, what supplies to take, and under what circumstances. We’ve always got glucose tablets with us – in my purse and in T-Bear’s SPIBelt – and now we’ve always got enough insulin in his Pod to cover meals and snacks, and to correct highs. Do we really need to also carry around Ketone Test Strips, glucose gel, and The Dreaded Glucagon Impaler everywhere we go? Should we also carry an extra Pod and insulin? And, most important, which bag should we carry everything in? ‘Cause with me, it’s all about the bag.

Anyway, I had just about decided that for most close-to-home outings, we just need to take along the two SPIBelts and we’d be fine. We’d be close enough we could just bolt home if there was a pump failure other unforeseen circumstances. No need to carry around an emergency bag. Now, this does go against my Mama Bear “emergency preparedness” instinct, since I tend to always “prepare for the worst and hope for the best.” But, being a recovering control-a-holic as I am, I push myself to “let go” as much as seems reasonably possible. So, today I “let go” and decided that we’d leave the emergency CamiPack at home.

Our first outing, to the Orthodontist, was fine. We even stopped at CVS on the way there for an Emergency Chip Run because, by my calculations, T-Bear would be needing a carb load right about the time BroBear was getting fitted with whatever new gizmo he was being fitted with today. Bolusing in the car was fabulous. But, he was running pretty high. (Turns out, I forgot to bolus his breakfast, which, by the way was really easy to check and confirm with all that information being stored in the PDM, but that’s another story). So, I corrected and covered in the car, and after our appointment headed home for lunch. Then, off to the Y for some swimming.

T-Bear’s BG usually drops pretty quickly when he swims, and I usually feed him glucose tablets at the rate of 20 g carbs per hour to keep him steady. Of course, that was when he was on Lantus and I couldn’t control his basal insulin. Now, I can shut off his basal for a while if I need to, which I will probably do in the future. But, because he was running high, I left the basal on figuring the insulin plus the exercise would help bring his BG down. Peachy. No problem.

Except, after about an hour in the pool, on about the 500th cannon ball, T-Bear’s Pod came off. Entirely. Now, no insulin at all. And, 10 minutes before when I had him test, he was still high (190). And, because I know he can drop pretty quickly when swimming, and he had his basal going, I had opted not to give extra insulin to correct. Ooops.

I gave him and BooBoo Bear another 15 minutes in the pool, then dragged them out, had them get dressed (which took about 20 minutes because they were unsupervised), and headed home. Got home, slapped on a new Pod in record time (which T-Bear made a video of on his iPod), and tested his BG. All in all, probably about an hour Pod-less, after about 1 ½ hours of exercise, and he was over 300. Oops. Correct. Go on our merry way.

So, I guess I’ll be taking along the emergency CamiPack just about everywhere we go from now on, especially to the pool. And, maybe look for a water-proof sports wrap to try to keep the Pod in place when T-Bear is swimming. I wish they made a one-vial sized Poucho insulin cooler, now that we’re only carrying one vial at a time (woohoo!). Hmmm…what other cool bags and doo-dads could I buy as a result of this little debacle? There must be something else we need...

P.S. For all the pumpers out there, here's my shameless product plug. Have you seen these SPIBelts specially made to hold pumps? I holds the controller firmly against your body without bouncing around or slipping, and there's a little hole for the tubing to stick out. How cool is that?
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Thursday, May 13, 2010

Rufus' Birthday, Part Two

Continued from Part One...

Except that our night was far from “settled”. Of our three boys, T-Bear was the least likely to deal well with hospitalization. He was terrified of doctors, terrified of nurses, terrified of medical offices and hospitals, and had to be held down just to get his immunizations. For T-Bear, being in the hospital with needles being stuck into him and tubes coming out of him and people stabbing him every two hours was simply a nightmare. And, to top it off, they wouldn’t let him eat or drink, and he was starving and thirsting from the high BG. It was a very, very sad night. And, for the second night in a row, I didn’t sleep, spending hours and hours holding his hand and soothing him. I caught a few cat naps on the folding-down chair-that-wants-to-be-a-bed during those times when T-Bear drifted off to sleep due to sheer exhaustion.

On Day Two, I sent a brief (probably curt) mass e-mail to everyone in my address book explaining that T-Bear had been diagnosed with Type 1 Diabetes, and that I would be posting regular updates on our newly-established blog. The messages of sympathy and support were nearly overwhelming, and deeply, deeply appreciated. It was a blessing not to have to field a dozen phone calls, or send out e-mail updates and then feel pressured to respond to the individual messages. The blog turned out to be one of those nifty little gifts from the universe, perfectly timed to perfectly fill a need during a very difficult time. I’ve realized that it’s also a gift in that we now have a day-by-day, blow-by-blow, woman-on-the-scene record of those very significant and important days in our family’s history. And, if ever T-Bear asks, “What was it like when I was diagnosed?” we’ve got a record of his journey right there for him.

The Arnold Palmer Hospital for Children and the staff were fabulous. T-Bear was in a care suite set up with two beds (the other bed was empty) and a separate room for a more intensive care patient, and the shared nurse had her station in the suite. She was there, in the room, almost all of the time, taking care of her paperwork, phones calls, etc. right there, and only two patients to look after. Everyone we met was caring and understanding and supportive, and seemed to definitely know their business. It was another one of those blessings in disguise that we ended up there, and that we got a referral list that led us to our permanent Pediatric Endocrinologist, who we adore. If we’d been at home, we would have ended up with much different care, and probably would not have ended up with Dr. A and his wonderful staff, which would have been a tragedy.

T-Bear continued to respond well to treatment, though he really, really wanted to get out of there. It got a bit easier for him when the Child Life lady brought in an Xbox for him to play on (blessed distraction). We were brought a backpack from JDRF; T-Bear got his buddy, Rufus, and I got about 20 lb of information to sift through. Just the beginning of information overload. Papa Bear and I met with the Certified Diabetes Educator (CDE) for a run-down on diabetes and its management. In one of those moments that reminds me why I love him so much, Papa Bear asked the CDE if he couldn’t just give T-Bear half his pancreas so he wouldn’t have to take insulin every day for the rest of his life (the answer is “no”). Then, we met with the dietician for T-Bear’s meal plan and carb counting basics. That evening T-Bear was taken off the IV and was allowed to eat a meal, I did my first blood glucose test on T-Bear, and learned how to draw an insulin dose (thankfully, the nurse took care of the injection).

After an uneventful night, I took care of BG testing and insulin dosing, we hung out with some of the other kids in the play room, and managed to get released by mid-afternoon. Papa Bear, Brother Bear and BooBoo Bear brought T-Bear a bright orange flight suit and cap from Kennedy Space Center, along with a teddy bear dressed for a space walk. So, T-Bear made his exit from the hospital riding in a wheel chair, dressed in his astronaut suit, and cuddling three bears; Rufus The Bear With Diabetes, Space Bear, and Rock Bear (given to him by the ambulance crew during his transport from the ER to the hospital). It was pretty intimidating the amount of STUFF we were being sent home with, but being the Organization Queen that I am, I had it all sorted and ready to go. We managed to drop off, have filled, and pick up the first of MANY prescription orders for T-Bear so he would have syringes with which to inject insulin for dinner (I love Walgreens). And, after deciding against eating out for dinner (I almost choked when Papa Bear suggested it), we got pizza at our resort suite and had a quiet night. Except for the 2:00 am BG check.

The next day, we headed home. On the way out of town, juggling my cellphone, a bag full of D-stuff, and The Calendar In My Head, I managed to set up a follow-up appointment with Dr. A for later that week, and have T-Bear’s records transferred from the hospital to Dr. A’s office from the comfort of our truck (I LOVE technology). A ten-hour journey by car with a child newly diagnosed with diabetes, and a mom who was trying to be confident in her ability to take care of him. Totally screwed up the carb count at Subway for lunch; he was on R & N insulin at that time, so I was trying to match up a sandwich he would actually eat with the carbs allowed for lunch. But, of course, he survived my bungle (the first of many). And, I don’t think home ever looked so good as when we pulled in late that night.

So, I pretty much consider reaching home the end of our “diagnosis story”. Of course, it’s really not the end of the story, but just the beginning of this particular leg of our family’s journey. For anyone who would like to read about how this story unfolded for us day-by-day, here are the links as I posted them.

A Diagnosis May 14th
An Update May 14th
Another Update May 14th
Friday May 15th
Friday Evening May 15th
Heading Home - Saturday Morning May 16th
Saturday Evening - HOME! May 17th

Wednesday, May 12, 2010

Rufus' Birthday

It’s been one year. Twelve months. Fifty-two weeks. 365 days. 1,825 finger pricks. 2,140 injections. As of tomorrow, it will have been one year since Rufus The Bear With Diabetes became a member of our family. And, as it so happens, just about a week since Rufus and T-Bear became full-fledged pumpers. Here’s their story.

We were on vacation in Orlando, Florida. Yep, on vacation. Our first “real live family vacation”, as Papa Bear put it. He had found a deal on a suite at a new resort property, we’d driven ten hours or so to get there, and had settled in to our little “home away from home”. Papa Bear had planned out the entire ten-day stint, and had very kindly scheduled in plenty of “down” time for all of us. One day at a “thing”, one day at the resort in the pool. Our rooms had a fully stocked kitchen, so I’d bought groceries and we were enjoying home-cooked meals in addition to frequent eating out at local restaurants. And, because I was on vacation and I could, I started a blog. This blog. The one you’re reading right now. Mostly on a whim, just because I had luscious free time on my hands and I could. Just to see what would happen. Because it seemed like the perfect way to share our “real live family vacation” with friends and family, pix and all, day by day. Great idea, huh? Well, it turned out to be an invaluable life-line during some of the most trying days of our family’s life.



Looking back at this picture, I see the tiredness in T-Bear’s eyes. He’s having a great time, he’s lovin’ the pool and being in a new place and all the great plans we have, but he’s just tired. And, he’d been tired for a couple of weeks. “Growth spurt,” I’d thought. “The onslaught of summer heat and humidity in The South,” I’d thought.

And, we seemed to make more than the usual pit stops on the drive down, because T-Bear had to pee so much, and that continued for our first few days in Orlando. “He’s drinking a lot of water because and it’s hotter here than at home, so, yeah, he’s gotta pee more,” I thought. I even captured a relief break on the way to Kennedy Space Center, because it was “out of the ordinary” enough it caught my attention. It wasn’t until later that I remembered he had wet the bed a couple of times in the week before we left, which NEVER happened.

And, he was thirsty all the time. He’d suck down his drink (usually milk), and be begging for my drink as well. Empty water bottles littered the floorboards of the truck after every outing. There were so many water bottles, BooBoo Bear made a costume out of the labels in the truck on the way to the Space Center. The Night Before, I remember thinking how odd it was that he got up in the middle of the night to get a drink of milk. “T-Bear never gets up in the middle of the night to drink milk at home,” I thought.

Then, he lost his appetite. At The Rainforest Café T-Bear ordered the kids’ Mac & Cheese, a big pile of Mac & Cheese, his favorite food on the entire planet, and he barely touched it. “He’s worn out from all the activity and excitement of the day,” I thought. And I had to escort him to the bathroom twice during dinner. “He really drank a lot today, probably from the heat and activity, no wonder he’s gotta pee so much,” I thought.

Then, he got sick. Really sick. Which never happens. His brothers and the rest of the family can be puking their guts out for hours on end, and T-Bear will throw up once and be done with it. The kid has an iron stomach. So, you’d think I’d be concerned when the kid who never pukes starts puking every hour on the hour. And then, every half hour. And then, every fifteen minutes. All night. But, I’d gotten used to the vomiting routine with BroBear’s Cyclical Vomiting Syndrome, so alarm bells didn’t go off. Until he’d been vomiting all night, and most of the morning, and showed no signs of letting up, no matter what I did. Papa Bear had taken the other two Cubs back to the Space Center that morning, and I called him to come home early. “I think we need to take T-Bear to the ER for IV fluids.” We’d been through this before with his brother. Just plump them up with some fluids, the vomiting stops, and bring ‘em back home to rest.

So, Papa Bear took T-Bear to the local ER while I stayed with his brothers. It must have been a really efficient ER, because within a couple of hours Papa called to tell me that T-Bear had Type 1 Diabetes. All I heard was “diabetes”, and my heart stopped. Diabetes. That’s the disease that kills you very slowly over time. The one where you go blind. The one where you have to chop off parts of your body because you stubbed your toe one day and it never healed and gangrene set in and the only way to prevent it eating up your entire leg was to chop off your entire foot and hope it heals, which it probably doesn’t, and it eventually kills you over a few months. That diabetes. In MY CHILD. I was horrified and terrified.

“They’re going to transfer him to the Children’s Hospital.” “Okay,” I manage to barely squeak because I couldn’t breathe. “I’ll call you when we get settled in.” “Okay,” I squeaked, gasping for breath. I’d gone into another room, away from the boys, and sat there for a few minutes, my hand clasped over my mouth so they wouldn’t hear my strangled sobs. I didn’t want to upset them. I didn’t know what to say to them.

Then, my logical brain kicked in. I grabbed my laptop, Googled “Type 1 Diabetes”, and gave myself a 30 minute crash course on this disease. And then, the soul-strangling guilt kicked in. The symptoms of onset. Every symptom. Right there. T-Bear had had every single symptom, and I didn’t realize this list of symptoms, everything that I had casually noted in my mommy brain but had dismissed as not important, was his little body screaming “Your child is dying.” And I didn’t hear it. I didn’t know. More strangled sobs so I don’t upset his brothers.

Then, my Emergency Mom brain kicked in. Pull yourself together, figure out what needs to be done, and do it. Fall apart later. Armed with my 30-minute crash course, I explained to BroBear and BooBoo Bear that their brother was sick, he was being taken to the hospital where doctors and nurses were going to take care of him, that he had an serious disease, but he was going to be okay. A few days in the hospital, then we’ll take him home.

Papa Bear came back that evening, completely exhausted. I’d already packed a few things, including my laptop, and was ready for my shift at the hospital. Driving there, T-Bear’s nurse called me to let me know the latest. “He’s resting, he’s looking better, he’s responding to treatment, he’s going to be okay.” That was the end of the day, May 13, 2009. I arrived at the hospital, found my little boy, and settled in for the night.

Part Two tomorrow…

Tuesday, May 11, 2010

Our First Week Pumping

Well, our first full week pumping has been kind of a mixed bag. The pump itself has been all good, and I can tell you that the past several days would have been much more challenging without the pump.

Thursday night, T-Bear was pretty high at bedtime (335) and I didn’t know why. That can mean a pump problem, and when I checked the cannula there seemed to be a tiny bit of blood around the insertion site. Okay, I figured, looks like maybe the Pod got knocked while the kids were horsing around on the trampoline, and maybe the cannula isn’t sitting quite right. So, I corrected and retested about an hour later, and he was fine (116) so I knew he was getting insulin. Just for the heck of it, I checked again at about 4:00 am, and he was high again (241). Whaaa? No food, and his BG goes up in his sleep? Could be a pump problem, but maybe not. I correct and retest in an hour. Down a bit (217). Correct and recheck in two hours, and he’s up again (253). At 8:00 am we change out the Pod, and two hours later he’s still a little bit high, but by lunch he’s fine. And, BooBoo Bear is sick. So, either the Pod was knocked and T-Bear wasn’t getting the full insulin dose I was programming, or he was getting sick, which always pushes his BG up.

Turns out he was getting sick. The kids all got sick with a respiratory virus that’s been holding on like a dickens since Friday. I, in my infinite wisdom, waited until Sunday, Mother’s Day, to get sick. And Papa Bear was working that day. Joy. At least the kids were feeling better and occupying themselves by then, so I could spend most of the day in bed. Reading. Heehee.

So, how has the OmniPod made our sick days better? Viruses usually mean higher BG for T-Bear. Before the pump, that meant either more frequent injections, or leaving him high for longer periods, depending on how miserable he was at the time (really, who wants to be stabbed in the butt when you’ve got burning sinuses and hacking cough?). With the pump, we can give him more frequent corrections, keeping his BG from getting out of hand, with no additional discomfort

Also, the correction doses are more precise (as little as .05 U at a time, rather than .5 U eyeballed in a syringe) so we’re not having the lows following corrections that we were having with injections (low + fever = bad juju).

Oh, and the BG reminder is pretty cool. As part of the testing and dosing procedure, the PDM will ask me whether or not I want to schedule a BG reminder, and how far out I want the reminder to remind me (usually 2 to 2.5 hours, depending on whether or not he’s eating). No more fiddling with reseting the timer on my watch. And, unlike my watch, the PDM will keep on reminding me every five minutes until I shut it off. No more missed reminders because I slept through the two alarms, or watching a loud movie, or in my house with three wild monkeys making all kinds of noise. You get the picture.

But, really, I just can’t overemphasize the importance of the convenience factor, especially when Mama Bear gets sick. With injections, we had the Diabetes Counter in the kitchen with everything we needed to test, calculate, log and dose. It pretty much had to be done in the kitchen, or I’d be running up and down stairs for all the little gizmos I’d forgotten. So, if I had to test T-Bear in the middle of the night, it was downstairs to get the test kit and log sheet, upstairs to test him, oh shit he’s high need to do a correction. Back downstairs to get write down the BG because I forgot to bring a pen the first time, get the calculator to figure out the correction dose, write it down, draw the dose. Oh shit I just dropped another vial and shattered it on the tile floor, so get another vial from the fridge, which is going to be COLD going in, and cause more discomfort than necessary. Draw the dose, back upstairs to inject. Back downstairs because I forgot the alcohol wipe, and back upstairs. Oh shit, forgot the blasted rocket, so back downstairs for the rocket, back upstairs to deliver the dose to a grumpy kid. Can I go back to bed now before I pass out? Oh, but I’ve got to get up and check him again in two hours in case I gave a slight overdose and he’s going low…

Now, everything I need to test and dose in the middle of the night I can hold in one hand, AND, I don’t have to do any math (what a blessing that is when you’re sick and exhausted). T-Bear’s SPIBelt holds the lancet, alcohol wipes, test strips and back-up meter (plus emergency glucose tablets...yummy). The PDM sits in the palm of my hand, and I bring it with me back to bed so I can hear the alarm, so I don’t have to either depend on T-Bear waking to the alarm or set a 2nd alarm for myself. Five minutes, start to finish, and I can go back to bed. I almost don’t even mind getting up again in two hours to do it again. Almost.

So, now that we’re all just about back on our collective feet, I expect the next couple of weeks to be much smoother. It will definitely be easier to spot trends and patterns without the added complication of virus-spiked highs, so we'll know whether or not his programming needs to be adjusted. My Mommy Sense says it's all programmed just fine and it's going to be smooth sailing for a bit. Wouldn't that be nice?
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Monday, May 10, 2010

A Day With Diabetes and Diabetes Blog Week

It's Diabetes Blog Week! Yay!

Karen at Bitter-Sweet came up with the idea and is spearheading the effort, and many of my new D-Mom Blog Buddies are participating. I, being the rebel that I am, am not formally participating, but since we're in Week One with the OmniPod, and T-Bear's 1st dx anniversary is on Thursday, I'm sure I'll be posting about Diabetes most of the week.

So, if you see a bunch of My Blog World links all showing similar titles all this week, that's pretty much what's going on. For a list of day-by-day topics, check out Karen's link above. As for me, since I recently wrote about what a day caring for a T1 kid looks like, I'm just popping in the link for you to click on if you'd like to read it.

A Day With Diabetes


Geez, how much easier is T-Bear's care now that he's pumping? Maybe I'll write about that tomorrow... :)

Thursday, May 6, 2010

Our First 48 Hours

It’s been about 48 hours since T-Bear started pumping, and it’s going really, really well. Our first night, there were no real problems overnight (we were checking BG every two hours). We did a couple of ½ corrections early on, and a glass of milk around 4:00 am to bring him up a little. By the time T-Bear and I finished our breakfast burritos in bed, I was ready for a nap. We hung out at home, laid low most of the day, and did frequent BG checks. Had dinner with neighbors to celebrate Cindo de Mayo, during which T-Bear mostly grazed and I stacked insulin to keep up…a little too easy with the pump, I have to admit.

We only checked every four hours last night, and he stayed pretty much on target. I faxed numbers to the Endo and chatted with one of the CDE’s; no changes to his settings at this point. Another quiet day at home, and T-Bear handled his own BG check and bolus for lunch (with me looking over his shoulder). Wasn’t THAT a cool moment?!?

We’ve got friends coming to hang out this afternoon, and Papa Bear returns home tonight. Tomorrow will be our first "pumped outing” – a birthday party at a mini-golf place. With PDM in hand and Pod on butt, it’s gonna be a comparative breeze…

Tuesday, May 4, 2010

WE......ARE.......PUMPING!!!!!

And, not that fake saline stuff. The REAL DEAL, BABY! INSULIN! IN THE PUMP! RIGHT NOW! COURSING THROUGH T-BEAR’S CUTE LITTLE BUTT CHEEK! RIGHT NOW! WOOOOOHOOOOO!

Can you tell I’m excited?


Our first ever, fully loaded, fully operational POD!
WITH INSULIN!!!
Ain't that a cute little butt cheek? :)


So, here’s what happened. Just before we were getting ready to leave for our Pump Training and Saline Start, our absolute favorite CDE on the entire planet, Tami, called to let me know that something came up, she wouldn’t be able to do our training, but a very nice, very competent CDE from the hospital was going to handle our training. Maybe you remember her? Karen? Anyway, because of this little change in plans, she said, we were going to go directly to pumping insulin today.

Eeeeeeeeeeeeeeeeee!!!!!!!!!, I said. I think I may have been jumping up and down at that point. Definitely squealing. Possibly even hyperventillating. I can't remember exactly. I may have passed out. Maybe.

Now, I was actually planning to try to bully our way right to pumping insulin (skipping the saline trial) if at all possible, because I was absolutely certain that I was ready, and I just DID NOT WANT TO WAIT. I’d been rehearsing my talking points and my Pleading Mommy Face all morning. After all, I’d read every piece of written material that came with the pump, including the 10 lb User’s Manual cover-to-cover, went through all sections of the on-line tutorial, had chatted with other on-line D-Moms about the Pod, and had already downloaded the CoPilot Health Management System and OmniPod interface software on my laptop. I even tried to investigate the CoPilot program without any data to look at, which it didn’t really like all that much. (Can’t wait to fiddle with that particular gizmo).

But, I was sure I was READY, and, as it turns out, I was. Totally. As certified by a Certified Diabetes Educator named Karen, who actually remembered me from the “Beyond Basics” diabetes class she taught and I attended almost a YEAR ago. That’s my kind of educator. Turns out, Tami had warned Karen that we were “smart” (heehee), and we proved her right. Despite having two kids training along with me (Karen was cool enough to provide two additional PDM’s so T-Bear and BroBear could go through the programming process along with me, which they TOTALLY rocked at…she could barely keep up with them), we were fully trained, pumping insulin, and outta there inside of two hours. Karen said it was the quickest training she had ever done. Huuuuuaaaah!

So, we’re pumping insulin! Woohoo!

I’m very comfortable with the basal, bolus and corrections we programmed (I even specifically requested we activate the "reverse correction" feature, which, I think, earned Brownie Points with Karen), but, still, we’ll be testing BG every two hours throughout the night tonight in case of lows. Testing every four hours tomorrow night. Reporting BG and dosing daily for a few days. Chatting with CDE’s and tweaking the programming if needed. But, I am very confident that we will be pumping flawlessly by the weekend. Comparatively. ;)

And, how’s it working so far? FABULOUS! On the way home from our appointment, JUST BECAUSE WE COULD, we stopped off at BK and got fries for snack and BOLUSED IN THE CAR! Woooohoooo! It was soooooo Effing COOOL! NO NEEDLES! NO VIALS! NO ALCOHOL SWABS! NO CALUCLATOR! NO BALANCING ALL THAT CRAP ON MY LAP WHILE I’M TRYING TO CALCULATE AND DRAW A DOSE AND GET MY SON TO SHOOT UP IN THE CAR JUST SO HE CAN HAVE A FEW FRIES! OMG! I’M SO HIGH ON PUMPING!

(Deep breath). Okay, I think I’m okay now. Coming down. Very, very slowly. It may take awhile. A couple of days. Or weeks. Maybe even months. I’m so relieved and happy.

Back to life, now.

Maybe.

I’m still really high from pumping.

I’ll probably come down about 4:00 am when I have to get up for the fourth time to test T-Bear.
Maybe.

Heehee.

See you all tomorrow.

Heehee.

Monday, May 3, 2010

Normal Stuff

Yesterday we celebrated a friend's birthday at the park. It was warm and WINDY!!! I don't remember winds that strong here since we moved from California. We had the usual fly-away plates, napkins, cups, drinks, grills, and clothing items (just kidding), but we were also able to enjoy watching some kite flying. One particular guy with a very large parachute-looking kite was just about taken off his feet several times by strong gusts. Our little birthday friend got a sweet little bike, Papa and I got to hang with some grownups, and the boys all had a great time.

But, my favorite moment yesterday was this...


T-Bear, Papa, and BooBoo returning from an Explore at the creek.

Sweet.


Sunday, May 2, 2010

To D-Blog, or Not To D-Blog

Over the past week or so, I have plopped myself into the middle of a veritable gaggle of D-Mom bloggers. Moms whose children have Type 1 Diabetes, and who blog about their experiences and how their family life is impacted by this disease. I’ve found some really great moms out there, women who are carving time out of their overly busy lives, dedicating some of their own tiny bits of “me time” to share their own experiences, wit, wisdom, and knowledge, and to support others whose families have been invaded by this very unwelcomed guest. There are lots more D-Mom blogs out there I haven’t had time to explore yet, and I’ve added several new links to “My Blog World” so I can follow these ladies writings. But I want to particularly spotlight Laura, who has provided a wealth of first-hand information on the OmniPod, as well as taking time to chat with me. And, Meri who is raising four boys, three of whom have diabetes, because she just cracks me up. Even if you don’t know that much about diabetes, her post Rookie Mistake will make you laugh, even though the subject's really not funny. But, that’s Meri’s gift to all of us D-Moms; getting us to let go just a little bit and find some humor in our difficulties. I deeply appreciate every D-Mom I’ve found for being so honest in sharing their lives with the rest of us. It helps the rest of us lighten up just a bit and cut ourselves some slack from time to time.

So, that leads me to the question, “Do I want to have a blog dedicated to diabetes and its impact on our family?” Do I want to share our everyday trials and triumphs of living with this disease with the blog world? Share the good, the bad, and the ugly on a daily or semi-weekly basis? Express my own thoughts and feelings about this daily rollercoaster ride for others to read and possibly find comfort in? No. I don’t. It seems selfish now that I’ve said it. But, so much of my time, my energy, my thoughts, my LIFE has been eaten up by this disease over the past year. Like taking care of a newborn, you have to be on call at all times. Every couple of hours you’ve got to feed and tend to it. There are supplies to keep stocked up and emergency snacks to keep on hand and meals to plan and cook on schedule, just to keep things running smoothly. And then there’s the cholic, and the teething, and the little illnesses, and all the unexpected hiccups along the way. You spend just about all of your time either tending to or thinking about the care of this little creature. And, when that child is finally asleep, and all of your “have to’s” are done, and you finally have a few minutes of peace, sometimes you just don’t want to have to think about that little bundle for a little while. You want to think of other things. Things that don’t make you frazzled, that don’t keep you up worrying at night, that don’t make you cry with frustration at times, that don’t stress you out and age you prematurely and turn your hair gray.

There have been days on end when I could think of nothing but this disease and its impact on my son and my family. It has aged me, it has sucked the life from me, and at times it has made me forget how blessed our lives are. How blessed I am. I am not going to give this brutal disease any more of my life that I already have, and that I have to in order to keep my son alive and well. When this monster goes down for a nap, when T-Bear is running around happy and smiling and free from the burden of his disease for just a little while, I don’t want to have to think about diabetes. I don’t want to write about it. I don’t want to give it one more minute of my life. I just want to enjoy my son, my family, and my life.

So, I’m going to keep blogging about our family life. Diabetes will be a part of it, but as small a part of it as I can possibly make it. There in the background, always present, and occasionally in the spotlight, but not the focus of my thoughts and writing time and energy. For the past year, our family blog has been good therapy for me because it has given me someplace to focus my mind and thoughts and attention other than diabetes. It has been a record of all of the goodness and blessings in our lives, of our adventures, and of the things that we enjoyed together, and of the things that made us laugh. It has reminded me, “Hey, I need to take a picture of that and blog about it,” and is providing us with an on-going family history. And it has given me something to pull up and look at and re-visit when I need to be reminded of how good our lives are, despite this disease.

Yep. Diabetes is in our lives. But, it’s not all there is to our lives. And, I’m keeping it in its place.

So, thank you to all you D-Mom Bloggers out there for sharing with the world all the ins and outs of living with diabetes, so I don't have to. You're all a blessing for what you're willing to do.